Looking for Answers When I Don’t Know the Questions

Shortly after my fiancée, Ashley, told me about her cystic fibrosis, we were engaged. Months later, she passed away, leaving me to figure out what I could have done differently and how to cope.

Editor’s Note: This was a post I wrote for the Cystic Fibrosis Foundation’s blog in late 2017. I had been thinking about writing a post for them for a long time after Ashley passed, as a way to help others by sharing my experience as a CF spouse, and as a way to help myself. Getting your thoughts down in writing can be incredibly helpful, and it certainly was for me. They were great to work with and they really worked hard to make sure that the message I was trying to convey in the post shone through. I’d never consider myself much of a writer, but the post was named to the CFF blog’s top ten list for 2017, which is a collection of the ten most popular posts for that year. Despite hating the fact that I had to write it, I was proud of the accomplishment, and I hope Ashley is too.

Although Ashley and I met in June of 2015, it wasn’t until we told each other “I love you” and began talking about moving in together that I learned she had cystic fibrosis. I had suspected she had some health condition long before, but I never suspected Ashley had CF because I didn’t know what it was. After she told me, I knew that our relationship would change, although my feelings for her didn’t. What changed was that I became the partner of someone with CF.

A few months later, we got engaged, looked at forever homes, and talked about trying to have a baby someday. I began to educate myself about CF and Ashley began to open up to me about it. She realized that we were a team and I would be by her side for every second of the fight, no matter what.

Just when I thought I was starting to finally wrap my head around all this CF stuff, Ashley got really sick and was hospitalized with an infection. We thought we had turned a corner, but unfortunately, the infection wouldn’t let go. After a month-long fight in the intensive care unit (ICU), Ashley passed away three weeks shy of her 30th birthday. It felt like we went from lying on the couch watching TV together to her funeral in the blink of an eye.

Looking back, the signs of a decline were there. She was getting more infections, losing weight, and having a harder time doing the things she was accustomed to. During the last month of her life especially, her struggle had become a topic of daily conversation. I can see these signs in hindsight — and could see some of them at the time — but in the moment, I always thought she was okay and we’d get through it. I don’t think she truly knew how sick she was until the last few weeks.

It’s because of how healthy she seemed to be that I took my cues on how she was doing from her. She said she was okay and I accepted that. I still did not know enough about CF, or living with someone with CF, to know or deal with it any better than I did. Perhaps I was also a bit afraid of knowing the answers to certain questions. I wish I had asked some of these things sooner. She was forthcoming with me, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships. That’s the type of person she was.

Ashley was an amazing woman. She lived her life on her terms, and not CF’s. She accomplished a great deal in her short time here with us, and brought joy and happiness to so many. I wish we would have had the future we planned, but I’m grateful for the time we had, and I’m a better person for having known her.

That month in the ICU was the most difficult time of my life. The months since have not been much easier. Thankfully, my friends and family, including Ashley’s family, have been a great support. I also began seeing a counselor, and have joined — and actively engaged with — numerous online groups geared toward CF and spousal loss in general, all of which have been extremely helpful during the grieving process. Unfortunately, there is not a lot out there in terms of support for spouses of those with CF specifically, but I hope organizations like Project CF Spouse will change that. It’s a nonprofit that works to educate and support spouses of people with CF. I don’t know if Project CF Spouse would have prepared me for all I went through with Ashley, but it’s clear to me that CF spouses are in a unique situation, and we can benefit from the wisdom and experience of others like us.

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